Your Kid’s Sniffles are My Kid’s PICU Stay

It’s that time of year again. The leaves are trying to change (or rather fall off here in south Louisiana), pumpkin spice flavored everything is stocking the store shelves, moms everywhere are pulling out their kids’ winter clothes from last year (praying they fit for just a few more wears), and everyone around is sniffling, coughing and sneezing. Before I was inducted into the “special needs moms club” I LOVED this time of year. However, I now dread it. Okay, I don’t dread it, I HATE it.

You see, my kiddo is part of the approximate 20% of children in the USA who are considered to have complex medical needs. My Connor was born with multiple “specialties” that cause him to be extremely medically fragile. He is the reason I hate this beautiful weather and time of year. The cold and flu season is reported to be from October until the beginning of Spring each year, and you can bet that you’ll find my family at the doctor’s office at the end of September getting our vaccines to ward off any and all types of flu, viruses, colds, and epizoodies (our family word for any sickness). But we can’t live in a bubble, and we must go out into the world praying that these epizoodies stay far, far away from us, especially my medically fragile child.

What many people may not know is that these medically complex children, especially those with developmental delays, don’t get sick like our typical kids. They can’t just get a decongestant or antibiotic, get some rest, drink extra fluids, and bounce back within a few days. No, they absolutely cannot. These kids battle an illness. They go to war when an infection or virus takes over their body. They have to fight it off with every ounce of strength they can muster up. A simple cold, also commonly known as rhinovirus, can land our babies in the hospital, on oxygen, and receiving chest physical therapy (which is basically pounding their chest and back hoping the gunk doesn’t find a home in their lungs) every few hours. It’s a big deal. But wait, what happens when the gunk does make itself at home in their lungs? Well, that would lead to a nasty little condition called PNEUMONIA. It is life threatening for anyone, but when our medically complex children get the P word (by way of cold virus, flu, aspiration, etc) it could be detrimental and the “life threatening” phrase is never far from our minds as we hover over our children in the Pediatric Intensive Care Unit.

So I have a plea for all you parents out there. This is coming from my momma heart, deep down where I hold all of my hidden thoughts. The place where I keep the thoughts I have, but dare to never say because they might hurt someone’s feelings. So here goes….KEEP YOUR SICK KID AT HOME. PLEASE!!!! You may think, “Oh, he just has a cold and the sniffles. He can go to that birthday party.”  Well, sure he can go, but can you just think for one second about the other kids that might be there? You can obviously tell my child is special and complex because of his big, black 70 pound wheelchair, but what about another medically complex child that has no outward sign? Like a child with an immunodeficiency disorder or epilepsy (illnesses cause an increase in seizures)? Or you may send your child to school despite her 100 degree fever or her vomiting before breakfast. Perhaps you haven’t thought about this aspect before, but you must know that your child’s sniffles are my child’s PICU stay.

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I understand that parents out there have no intent to spread their child’s illness, and I know many parents work and have to take off when their child is sick. I totally understand. Ask me how many times I’ve taken off for my sick child since August or how many times I’ve had to take off to spend weeks in the hospital? Yep, I know; it’s hard taking off, but the fact is that our kids (typical or complex) need us there to help them recover when they are sick, and goodness knows we don’t want their illness to spread. This is also a great time to talk with our kids about tips on preventing the spread of viruses/illnesses:

  • Avoid close contact with others, such as hugging, kissing, or shaking hands.
  • Move away from people before coughing or sneezing.
  • Cough and sneeze into a tissue then throw it away, or cough and sneeze into your upper shirt sleeve, completely covering your mouth and nose.
  • Wash your hands after coughing, sneezing, or blowing your nose (and wash frequently).

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So if you are reading this, please know that I’m being sincere in my request, but also brutally honest about a very serious topic that affects my son and the other 20% of children (adults too) out there with complex medical needs during the cold/flu season.

Now while our kids are healthy and gunk free, let’s get to some pumpkin patch picking and enjoy this beautiful weather!

What do you do to protect your family during cold and flu season?

 

Katie
Katie, a self proclaimed "momma bear", enjoys living her busy, country life with her husband of 10 years and 3 sons just outside of Baton Rouge in Tangipahoa Parish. Katie attended Southeastern Louisiana University where she obtained a degree in Elementary and Special Education. Little did she know how her love of children with special needs would grow shortly after she graduated college. Her middle son, Connor, was born with a rare brain disorder called Schizencephaly-he is wheelchair bound, nonverbal, blind, battles retractable epilepsy, and is fed through a feeding tube. Katie and Connor endure the many trials they are put through with a smile and joy in their heart. Along with being an active member in her church and working for an online public school, Katie regularly advocates for those who experience developmental disabilities at the Louisiana State Capitol. She is the Region 9 leader for Louisiana Citizens for Action Now (LaCAN) and is a member at large for the Governor’s Advisory Council on Disability Affairs. When life's challenges seems too much to bear, Katie remembers this quote to keep forging ahead and being the voice for those who have none, “God often uses our deepest pain as the launching pad of our greatest calling.” -unknown

46 COMMENTS

  1. I appreciate this article so much, and have shared it on my networking pages/blog as well! My daughter, Breanna Ray, was born with a rare form of Cerebral Palsy called Lissencephaly. She suffered yearly with a compromised immune system. Being hospitalized with pneumonia that started from what would be a “normal” cold to us was a common occurrence for Breanna. She ultimately lost her life on March 20th, 2002, from pneumonia/seizure disorder/complications from CP. I strongly advocate parents keeping their sick children indoors. Thank you for your article! And special prayers for your beautiful son xoxoxo
    Respectfully, Kymberly

    • Yeah, that’s why we’re given sick days. But some employers give you 3 a year. Sometimes I cannot stay home because I’m sick and while I hate it, that’s just how it is.

  2. Thank you!! I have my own special needs child and this time of year is always scary. I don’t even let visitors into my home unless they ‘scrub up’ before they walk in. (I keep sanitizer and direct them immediately to the kitchen to wash)Too often a little germ is a big problem!

  3. The only thing I would change is to say, WE go to war when they get sick. I do not mean to sound selfish because it is not about me, but not just the child fights this battle. The mom does as well, and it takes a lot out of you to do everything in your power to help them get well again. And when they are well, you do not get a break. You drag yourself up again to do all the regular stuff that needs to be done on a dally basis.

    • Completely agree. When my medical baby gets sick, I join the fight. Extra breathing treatments, up and down all night to adjust his oxygen level because I don’t want to give him too much but I also need to keep his sats at a good level. Then we battle with the side effects of antibiotics. Increased fluids because of diarrhea but can’t run it too fast in the g-button or else he’ll reflux worse and he could aspirate it. Aspiration=pneumonia and starting the battle all over again. And then there are steroids… they work fantastic with respiratory infections but now his low immune system is virtually non-existent and we have to keep him under house arrest.

  4. Thank you so much for this! My son was born 17 weeks early and I was a basket case his first winter at home. This is his second winter at home. I very much appreciate when our friends, family, and therapists notify us when they or their families are sick. He needs socialization and to be around other kids. So many places don’t get why I ask about cleaning procedures and well child policies. I often wonder when I will stop feeling panic when someone coughs. Maybe never.

  5. Thanks for the great article. I would also like to add that the best way I protect my medically fragile child is by a whole food organic diet via his gtube. I use a high powered blender to give him real foods. Each year when school starts, I start giving him elderberry juice about a tsp a day to boost his immune system. I also give him garlic cloves mixed in his blend if he starts to get sick. I give him lots of fruits and veggies, grass fed meats, fish oil etc. There are many real foods to boost the immune system. Just wanted to say that hand washing and staying away from sick people help but boosting the immune system is the best line of defense. Another avenue is essential oils, and I am recently learning about homeopathy. Good to have many tools in the toolbox

  6. Thankyou. We are also in your shoes. Low immune system. We hate this time ov year. Even with her constant antibiotics they still come

  7. Thank you, from the bottom of my heart, for posting this. My child is an organ transplant patient and is immune-suppressed. In addition to the hospital time and life-threatening aspect of the “sniffles”, she has PTSD, anxiety, panic disorder and Dissociative disorder from waking up during various surgeries because she and anesthesia don’t get along so well. A common head cold (CMV) put her in and out of the hospital for 4 months, required 2 PICC lines, chemotherapy and a subsequent rejection and leukemia scare. Yet, I was once asked by a mother who brought her kid to the library sick with a fever, why – if my kid has a problem like that – I would ever bring her to the library when people could be sick? Helloooooo!?!? Why would you bring your sick kid with a fever to the library?!?!

  8. I’m in awe of all of your comments ladies!!! Thank you so much for letting me know how much this blog meant to you. It has been weighing on my heart for some time now and I just decided it needed to be said. It is so hard to explain to others on a day to day basis. Taking care of our kiddos when they are sick is absolutely exhausting on everyone involved, so yes I agree, WE do battle the illness! My Connor has a respiratory infections right now and I must get up every 10 minutes to suction him, breathing treatments, checking O2, CPT…the list goes on and on. Love to you all!!! And praying your kiddos have a healthy (or as healthy as they can get) cough/cold/flu season! 🙂

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